20 year old son

[Aneinu]

Thank you.
He's feeling good now, thank God.
Meanwhile, rheumy said he should go back to school.
We have some unanswered questions still.
Hopefully tomorrow.....

Sent from my SM-G920V using Tapatalk

[Aneinu]

Oh well, it's been a while.
He's now 21, do were in the process of switching doctors. Going from rainbow university to the clinic.
The rashes have been on and off. Allergist says maybe from Tylenol cold medication. Now, he can't really take stuff for constant cold/flus.

Last several weeks his joints have been hurting. Blood tests confirmed that inflammation is on the rise. Raised the preds to 20, maybe more. He finally switched to azathioprine from the rtx. Just yesterday. Today, he started with the nose bleeds. We will see what doctors say. Poor boy. He just wants to be a regular 21 year old. It's extremely tough.

Thank God there is medication and thank God the doctors have been responsive and helpful.

It's nice to have this forum. I really should use it more.

Sent from my SM-G920V using Tapatalk

[drz]

Your son might want to post here too for some support and a good outlet to express his concerns.

Oh well, it's been a while.
He's now 21, do were in the process of switching doctors. Going from rainbow university to the clinic.
The rashes have been on and off. Allergist says maybe from Tylenol cold medication. Now, he can't really take stuff for constant cold/flus.

Last several weeks his joints have been hurting. Blood tests confirmed that inflammation is on the rise. Raised the preds to 20, maybe more. He finally switched to azathioprine from the rtx. Just yesterday. Today, he started with the nose bleeds. We will see what doctors say. Poor boy. He just wants to be a regular 21 year old. It's extremely tough.

Thank God there is medication and thank God the doctors have been responsive and helpful.

It's nice to have this forum. I really should use it more.

Sent from my SM-G920V using Tapatalk

[Aneinu]

Thank you.
He doesn't really have access to this.

Sent from my SM-G920V using Tapatalk

[drz]

I think any smart phone or laptop or Ipad with internet access can get him here. Most hospitals and clinics offer wi-fi for patients too.

[Aneinu]

They admitted him to clinic today.
Doctor langford was concerned with stuff that shouldn't be in the kidney.
Subsequent checks show kidney function stable.
Doctor concerned with heart, something called egpa, churg-strauss.
They will do cat scan on lungs tonight and cardio something on heart tomorrow.
After some tests, they'd like to administer rituximab tomorrow under controlled environment.
They are giving high doses of steroids thru iv later tonight.
Dr villa-forte really explained things pretty well.

Sent from my SM-G920V using Tapatalk

[Pete]

@Aneinu,

Your son is in the care of two of the best Vasculitis doctors in the world. I hope the treatment they prescribe leads to a near normal life for your son.

[Alysia]

Hi Aneinu, sounds not easy it all.. but thanks God that he has best docs and going to get rtx soon. Its also good that they give him much steroids - both for the wg and to prevent reactions during the rtx IV.
As for the heart, I had some fluids in my heart and the cardio dr. explained to me that sometimes the heart can react like that to an inflamation going on somewhere else in the body. High pred can help. I hope his heart issue will be nothing to worry about.
Hang in there. I know how tough it is to be the caretaker, the parent.. one wishes to be the sick one instead of his loved one... sending many prayers. Please update us.

[Aneinu]

Thank you for that. There might have been some blood showing in cat scan, but it was ground glass opacity, so they not definite. Either way, it does show active disease in lung and they know it is active in kidney. Still waiting for echocardiogram and then for decision regarding ritucimab. Thank you so much for your concern.

Sent from my SM-G920V using Tapatalk

[Aneinu]

*After analyzing the cat scan again, they think it might be blood, which is indicator of diffuse alvrolar hemorrhage, which is what he had last time.

They are scheduling bronchoscopy for tomorrow morning.


This will determine if blood is from the lung.


If it is, they might need to change treatment, for it might be an indicator that the rituximab did not work.



Sent from my SM-G920V using Tapatalk